› Forums › General Melanoma Community › Stage 4 Brain Metastasis
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sgreenberg.
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- July 13, 2017 at 12:10 am
Hi there,
I am new to this forum and wanted to share my partners story of melanoma. He is currently Stage 4 with met to the brain.
He was first diagnosed 1.5 years ago age 26 with Stage 3 spread to lymph nodes. He underwent surgery but unfortunately a PET scan revealed the cancer had spread to his lungs liver and bowel. He underwent combined immunotherapy nivolumab and ipi, he managed 2 rounds of treatment before developing severe colitis and we had to stop treatment. A scan shortly after revealed very good news- all signs of his tumours had vanished thanks to this miracle treatment.
Unfortunately more bad news followed, 3 months later he was taken ill with severe headache and blurred vision, a brain scan showed the melanoma had returned as a 6cm tumour in his brain. We were devastated beyond belief. He underwent emergency surgery where they were able to remove the majority of the tumour. A small amount remained which was treated with gamma knife radiotherapy. For the last month he has been having nivolumab infusions once every 2 weeks, he is unable to go back on the combined treatment as his side effects were so severe. He has had an incredibly good melanoma specialist throughout this whole ordeal and currently his next whole body scan is scheduled for next month. He is relatively stable, has returned to work (can you believe!) however he has lost a portion of vision in his left eye as a result and feels tired constantly. As it stands his specialist has said we must wait and see what the next scan shows and move forward from there.We have both struggled hard throughout this process. He has fought this disease hard and has always remained strong, optimistic and brace despite everything. I have lots of anxiety about our situation and want to remain strong to support him. I wondered if anyone had a similar experience and had success with treating tumours in the brain? I have sleepless nights constantly worrying about what the future will bring, feel alone and scared as I don't want to burden my partner with my worry for him. Hoping to connect with others and find some comfort.
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- July 13, 2017 at 12:42 am
You are doing a great job providing support during such a terrible time. As a patient with stage IV and also brain mets I can't for a moment think how hard it must be to be a care giver. My first two initial brain mets responded to Ipi/nivo – i had two treatments before I was sidelined with hepatitis. The third brain tumor grew quickly and was removed quickly and at the 10 day post op MRI was already growing back. I had aggressive radiation and restarted nivo and so far I've had two very good MRIs. I am still healing from the surgery. I've lost some sensation in my leg/foot but it is very slowly coming back. I wish you some comfort and good things to come in the future for you both. You are certainly not alone. This board is full of very supportive people as I'm sure you will soon see.
Best wishes to you.
Jennifer
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- July 13, 2017 at 12:49 am
You and your partner have much to reasonably hope for. I was dx'd with melanoma in 2003. Developed brain and lung mets in 2010. I had SRS to my brain tumor and surgery for the lung. The current standard of care treatments for melanoma were not FDA approved at that time (neither ipi, anti-PD-1 nor BRAFi). However, I gained a place in a nivo trial in Dec of that year. But, I had also gained yet another brain tumor. Nevertheless, I started the trial and by the first MRI 3 months later that brain tumor was gone. I was in the trial for 2 1/2 years..the duration it was set up for. My last treatment was in June 2013. I remain NED with no further treatment. Here is a post I put up about brain mets today…with links to many more: http://chaoticallypreciselifeloveandmelanoma.blogspot.com/2017/07/prognostic-factors-and-survival-in.html
Fatigue is very common with anti-PD-1 therapy. However, many…including myself…return to work. I worked through my entire trial and continue to do so today. Additionally, we now know that radiation PLUS immunotherapy has been proven to garner a greater response than either alone. Hang in there. Breathe. Support your partner. LIVE!!!! I wish you my best. Celeste
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- July 13, 2017 at 6:04 am
Best of health to your partner.
Brain mets can be lived with. We've been doing is for a year and half.
My wife has 9+ mets, was treated with Taf/Mek, now Keytruda, probably Nivo next.
She's been hsopitalized four times in the past year (twice this past month) following seizures.
And despite all this – she's CFO of a company, and goes in to work every single day. When she can't go in, she works remotely if she can't go in – including from the hospital.
It's certainly a medical matter – but I really believe it's a matter of choice. Good luck!
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